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This is a joint message between MitoAction, UMDF, and the Foundation for Mitochondrial Medicine for the benefit of the mitochondrial disease community.Patients, parents, and families -- please join us Tuesday, Dec. 6, 2016 at Noon EST (9 a.m. PST) by teleconference for a discussion of data from Stealth BioTherapeutics' Mitochondrial Myopathy clinical trial.
The groom and groomsmen wore BowTie Cause MitoAction bowties. The bridesmaids wore green. Every guest got a MitoAction bracelet. Even the wedding invite was green and included the Mito ribbon.
The bride, Devon Gottfurcht, has mitochondrial disease and she used her wedding to Dan DeSario as a vehicle to raise awareness about Mito. “There’s not a lot of awareness for mitochondrial disease,” she said.
After Jessica Gemayel lost her battle with mitochondrial disease a few months ago, her friends gathered to figure out what they could do in her memory.
Courtney Brown, Jessica’s best friend since middle school, and the rest of their gang decided to form Team Jess for the MitoAction Energy Walk & 5K presented by Stealth BioTherapeutics on Sunday, Sept. 18.
The seventh-graders at Long Branch (NJ) Middle School know about mitochondrial disease thanks to a creative teacher.
One challenge when creating clinical trials for people with mitochondrial disease is the tremendous diversity that exists in our community. Even patients with the same genetic diagnosis may have different symptoms and varying degrees of severity.
Lincoln Ogonowski’s mitochondrial disease limits his mobility, so big brother Luke Krumich will often play with Lincoln’s toys for him. “I know what he likes and what he thinks is funny,” Luke said.
Lincoln is 3 years old and has Leigh’s syndrome, a devastating form of mitochondrial disease. Luke, 12, is his protective, loving, awesome older brother. The sons of Dyna and Rob Danger of Freehold, NJ, are as close as brothers can be.